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A camping we will go ... by insisting on mainstreaming, parents and children can teach others.

A Camping We Will Go ...

By insisting on mainstreaming, parents and children can teach others.

"Let's see... power chair, manual chair, battery charger, tire pump, pliers, bike buddy, tray, emergency numbers, asthma inhaler, medical card. And...sleeping bag, pillow, pants...more pants, underwear, pjs, shirts, coat. There! I think that will do it!"

Our 11-year-old son, Mahlon, is off to science camp, the outdoor education program offered to all fifth graders in our county. It's an opportunity to experience the great outdoors and learn about nature. It's an opportunity to be away from home and have fun. It's an opportunity to learn to live with your peers.

And, for us, it's yet another opportunity to educate another small population on how to Accept, Accommodate and Enjoy a child with special needs. This is an "Adventure Package" that we have "offered" frequently over our years as parents of a physically-challenged child. Mahlon was a premature baby, and by the time he was eight months old, it was evident that he had cerebral palsy. His major impairment involves motor skills, so he needs a wheelchair and total assistance with personal care. However, he has always been mainstreamed and can keep up with grade-level work.


The Accept part of the package is unavoidable. We expect our son to be mainstreamed whenever possible: in his school, in our neighborhood, in social activities. After all, he's a "regular kid" in a wheelchair.

I wave good-bye to Mahlon amidst all the other nervous and excited campers as I pull away in my van.

The Accommodate portion of the package is often an inspiring revelation for participants as they call upon their own resources (inner and outer) to solve problems: resources they were unaware they had. I have often gotten great new ideas from people who could look at my situation with Mahlon from a fresh perspective. I love new ideas!

The best part of this Adventure is the Enjoy part. Exceptional children give back so much with their unique point of view and their unconditional love that everyone comes away enriched. Mahlon's toileting aides thanked me at the end of the school year for the "privilege of helping Mahlon." And they were just taking him to the bathroom!


Allowing our exceptional children to be mainstreamed is a gift to the community, whether it be Cub Scouts, Brownies, the schools, the church, or the neighborhood. Insisting on mainstreaming (if you've decided it's appropriate) is often a lonely road. We face reluctant administrators, hesitant teachers, classmates, parents, doctors, dentists and a whole parade of uniformed and often scared citizenry. It's not a fun task. It's frustrating, confusing, exasperating, thankless and exhausting. But it can be worthwhile.

Mahlon called the second night he was at camp. "Dad, I need to come home." My husband had an initial moment of panic: Was Mahlon hurt? Was he being ignored? Was he being made fun of? He then calmly determined that it was none of these things. Mahlon, like many other campers, was just homesick. We encouraged him to "hang in there" for at least another day, even though he was now dependent on near strangers for all his needs. He did "hang in." He stayed the rest of the week and never regretted it.


We have to adopt the attitude that we and our children are teachers and that we have some valuable information to offer. We can "teach" things that people need to know: how to accept people with disabilities, how to "help," how to be flexible (this is a biggie!), and how to "go with the flow." I have learned this!

I cannot count the times that our plans have come to an abrupt halt because Mahlon's wheelchair has a flat tire, a blown fuse, a dead battery, or a broken belt. We quickly readjust and fix it or find an alternative. People without physically-challenged children can help out at these times too, and when they find a solution for you, they feel great about it! We just have to offer people the opportunity to help.


I take my role as "educator" seriously, recognizing that the success of mainstreaming my son is my responsibility too. Just because there are laws in place that say it should happen, is no guarantee that it will be done effectively, smoothly, or that it will be an enriching experience for your child.

Whenever I plunge into a new situation -- new school, new neighborhood, new class, or new experience (like science camp) -- I assume the people I'm working with know nothing. I like this assumption because it means I can start from square one. I can give them complete and accurate information and hopefully overcome any preconceived ideas about Mahlon in particular and about people with special needs in general. I can undo prejudices or at least set the stage for dissolving those prejudices.

I begin my process by telling people about cerebral palsy. Each year, from kindergarten and up, I've gone to Mahlon's class and given "our talk" during the first week of school. We, Mahlon and I, talk about what cerebral palsy is, why Mahlon has it, why he is in a wheelchair, what he can do, and what he can't do -- emphasizing that you "can't catch" what Mahlon has.

I take along visual aids to illustrate prematurity. We have a regular size baby doll and a preemie size doll. We have the doll clothes Mahlon wore in the intensive care nursery. And we have foot and hand prints of Mahlon and his brother at birth (his brother weighed 10 pounds at birth; Mahlon weighed two pounds). I know I can get the kids' attention with this approach. Then I give them the information. I give them the "big" words: cerebral palsy, brain injury, ventilator, physically challenged.

And we talk about how everyone has challenges, i.e., something that's hard for you to do. "For Mahlon it's hard to write and hard to move like you do. For you, maybe math is a challenge, or spelling, or reading, or playing the piano."

Children are wonderful. They listen and they understand because they are eager to know why Mahlon is in that fantastic motorized chair!

After I've taken care of the "whats" and the "whys" of my teaching process, I go to work on the "hows:" How will he get from here to the library? To the bathroom? To the cafeteria? How will he write his assignments? How will he go on field trips? And how will he go to science camp?!

My second great assumption is that any "how" question has an answer. If I'm absolutely backed into a corner, I'll say "I don't know about that one...but I'll figure out something!"

One parent lamented to me that it was "too bad about science camp," presuming, of course, that Mahlon couldn't possibly attend. Others may have had the same presumption.

I could hear opportunity knocking! I called the camp director and said, in an engaging voice, "Hi! I have a son with cerebral palsy who uses a wheelchair to move around and he's in the fifth grade at Robert Down School and will be attending camp the week of May 23rd. I'd like to meet with you and your staff so we can work out the details."


I'm Positive, Patient and Persistent and ready for the tough questions. Maybe I have just been lucky, but I have found that when I give people the opportunity to help, they usually do. If I approach mainstreaming with a positive attitude, I often find willing supporters. I may have to give them on-the-job training, but that's fun! Even the most reluctant folks can be inspired and can reinspire me!

The camp director was definitely reluctant. "How will he go hiking? We do lots of hiking you know."

"No problem!" I replied. We, as a family, worked out the answer to this one long ago. We also do a lot of hiking. We found that the pull-along child carrier we had purchased for my bike worked splendidly as a "rickshaw" to pull along the trails.

My husband got a wide army belt, hooked the arm of the "bike buddy" to the belt, fastened it around his waist and announced "I think this is going to work!" It did, and it has -- for years. We use it at the ocean to run along and chase waves, in pledge runs, and in any rough terrain where his wheelchair won't go. So we sent it to science camp. The counselors loved it! It broke up the monotony of just another week at camp.

Mahlon's classroom teacher jogged up along side Mahlon's rickshaw as they were hiking one day and asked how camp was going for him. Mahlon answered brightly, "Just great!" And then added with a twinkle, "Except I can't get my slaves to go fast enough!"

And so science camp worked. And school thus far has worked. YMCA Indian Guides worked. Swim lessons worked. And next year we face middle school, and after that high school, then college -- new people, new systems. New problems, new solutions.

I didn't imagine parenting would be like this, but it is, for me -- for us. And even in those times of utter weariness and deepest discouragement, I know my efforts are worthwhile. Mainstreaming is important.

There will always be people who think I'm too assertive; there will always be doctors, teachers and therapists who don't appreciate my input; there will always be people who don't want to learn about special needs. But if I can -- if you can -- help people to realize that mainstreaming can be a positive opportunity for children and adults, then all the frustration is worth it.

PHOTO : Michael, 10, helps his brother, Mahlon, 12, prepare for camp.
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Author:McAnaney, Kate Divine
Publication:The Exceptional Parent
Date:Mar 1, 1989
Previous Article:Proper seating: a key to participation.
Next Article:The language of toys: teaching communication skills to special-needs children - a guide for parents and teachers.

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